I'll Pay For You, But Not Them

Elizabeth Rosenthal's searing article about medical billing, adapted from her forthcoming book An American Illness, is well worth a read.  Its topic of sophisticated medical billing/upcoding -- done by organizations ostensibly acting in the best interests of patients and often under the guise of a non-profit status -- is also worthy of a discussion itself.  This is not that discussion.

What jumped out to me (and to many others, on Twitter and elsewhere) was the following indictment:

In other countries, when patients recover from a terrifying brain bleed — or, for that matter, when they battle cancer, or heal from a serious accident, or face down any other life-threatening health condition — they are allowed to spend their days focusing on getting better. Only in America do medical treatment and recovery coexist with a peculiar national dread: the struggle to figure out from the mounting pile of bills what portion of the fantastical charges you actually must pay. It is the sickness that eventually afflicts most every American.

Which leads me to crowdfunding.

Crowdfunding is hot.  Sites such as GoFundMe, Kickstarter, Indiegogo, or YouCaring are provide platforms for people requesting money to pitch their case, and for potential donors to see them and, if so inclined, to contribute.  The market was estimated at $34b in 2015 (about half of which was in North America), and is projected to grow at an annual compounded rate of 27% from 2016-2020.  It's big business.

Although the Affordable Care Act has sharply reduced the number of uninsured, the facts are that almost 30 million remain uninsured, health insurance deductibles continue to rise rapidly, and almost 70% of Americans have less than $1,000 in the bank to cover "emergency bills -- such as medical bills.

It's no wonder that crowdfunding has become popular.

The Pew Research Center found that, in 2016, 22% of Americans had contributed to a crowdfunding project, while another 41% had at least heard of crowdfunding.  About two-thirds of the contributions had gone to help someone in need; mostly commonly, a friend, friend-of-a-friend, or family member.  Only 3% had created such a campaign for themselves.

Assistance with medical expenses is a leading type of campaign.  Some 70% of GoFundMe's campaigns are in the medical category, CEO Rob Solomon told Esquire.

This seems like a good thing, right?  Matching up people who need help paying their medical bills with people who can help them?  It certainly can be, but it also has its share of problems.

For one thing, it often doesn't succeed.  A University of Washington study examined 200 GoFundMe health expense campaigns, and found that 90% did not reach their goals.  On average, they only raised 40% of their target; 10% netted less than $100.

The authors didn't pull their punches, warning that crowdfunding could "deepen social and health inequities in the U.S. by promoting forms of individualized charity that rely on unequally- distributed literacies to demonstrate deservingness and worth."

A recent Viewpoint in JAMA, by Young and Scheinberg, echoed these concerns.  They acknowledged that such campaigns can be effective, and can make the process of matching donors with need more efficient.  They raised several concerns, such as the role of physicians in such campaigns, especially if the information the campaign presents is inaccurate or misleading.

However, one of their most powerful concerns is the following:

it is important to recognize potential for unfairly advantaging those with the means to engage with online tools and tap into large social networks, which may lead to an underrepresentation of cases with the greatest need in which patients lack the tools to coordinate effective crowdfunding campaigns.

In other words, funds may not go to the most needy, but rather to the most media-savvy.

Esquire devoted an article on this problem, aptly headlined Go Viral or Die Trying.  It leads with the story of Kati McFranland, who confronted Senator Tom Cotton at a town hall event about coverage for pre-existing conditions.  She was articulate, attractive, had a real need -- and got national media exposure.

As media coverage boomed, so did her YouCaring campaign, going from $1500 to close to $50,000.

The article also cited a family who hired a professional photographer to create a video for their daughter's campaign; it helped them eventually raise $4 million.  GoFundMe's Solomon said: "A picture is worth 1,000 words, a video is worth maybe a million, It's really a storytelling platform, the more interesting and compelling the story the better these will do."

So, crowdfunding success may be based less on need than on how attractive you (or your children) are, how much you look like the people with money, how professionally done your campaign is, and how large your social media footprint is.

If any of that sounds fair, then our current health care system must also sound like the epitome of fairness.

Maybe that's just life in the 21st century.  Maybe that just the consequence of social media; it's hard to engage, and some causes and some people are simply more appealing -- most deserving or not.  Maybe decrying the potential unfairness is about as pointless as decrying our wealth inequalities.

But maybe not.

Look, even in the United States, we don't do organ transplants by who pitches the most appealing story, or even who has the most money.  We established UNOS to take (most of) those kinds of subjective factors out of who gets a life-saving transplant.  UNOS matches available organs with potential recipients based on a variety of objective factors; social media footprint is not one of them.

We need a UNOS for assistance with medical expenses

It wouldn't be easy, but UNOS wasn't UNOS overnight.  It took decades to become what we know as UNOS today.

At the least, a crowdfunding UNOS could take into account severity (and expected duration) of the medical condition, size of the medical bills, and ability to pay.

Oh, and back to Ms. Rosenthal's findings: no one should have unpaid bills based on charges.  Provider charges are absurd at best and outrageous at worst.  Health care providers need to be muscled into limiting their charges to their most common insurance payment rates for people without insurance, and for people with low incomes.

Crowdfunding is cool.  For entrepreneurs, artists, or social causes, it is a great way to get access to capital.  There's an intriguing role for crowdfunding loans -- not donations -- to people who need cash flow assistance with their health care expenses.

But it's not how we should be funding health care expenses for people who can't afford them.

Disobey, Please

The M.I.T. Media Lab is taking nominations for its Disobedience Award, which was first announced last year.  As the award's site proudly quotes Joi Ito, the Director of the Lab and who came up with the idea: "You don't change the world by doing what you are told."

I love it.

The site, and the award's proponents, make clear that they are not talking about disobedience for the sake of disobedience.  It's not about breaking laws.  They're promoting "responsible disobedience," rule-breaking that is for the sake of the greater good.  The site specifies:

This award will go to a person or group engaged in what we believe is an extraordinary example of disobedience for the benefit of society."   

In Mr. Ito's original announcement, he elaborated:

The disobedience that we would like to call out is the kind that seeks to change society in a positive way, and is consistent with a key set of principles. The principles include non-violence, creativity, courage, and taking responsibility for one's actions." 

Given all that, $250,000 hardly seems enough, and it's a shame there can be only one winner.

The are two ways to participate: you can either nominate the eventual winner, or you can recruit someone else to nominate the winner.  Either way, you get to be flown to the awards ceremony on July 21, 2017.  Nominations close May 1 (and, no, it doesn't appear that being late to apply is the kind of disobedience they'll reward).

The award is funded by Reid Hoffman, the founder of Linkedin, who recently wrote about it on that platform.  His article is titled "Recognizing Rebels With A Cause," which is probably a good way to think of it.  Although one often thinks of disobedience in a Thoreau-type civil disobedience, Mr. Hoffman ties it closely to innovation:

In the realm of entrepreneurship, almost every great triumph has its roots in disobedience or contrarianism of one kind or another. And ultimately this impulse doesn't just create new products and companies, but also new industries, new institutions, and ultimately new cultural norms and expectations.

The Media Lab, he points out, serves as an example of how this can work: "researchers with widely varying areas of expertise are encouraged to collaborate and improvise in ways that become not just multi-disciplinary but antidisciplinary – disobedient."

Ethan Zuckerman, the Director of M.I.T.'s Center for Civic Media, told The New York Times: "In a lot of large institutions there’s really two ways you make progress. You make progress when people follow the rules and work their way through the processes, and then sometimes you make very radical progress by someone who essentially says, ‘Look, these processes don’t work anymore, and I need to have a radical shift in what I’m doing.’”

It just takes someone to stand up.

The creators of the award are probably not thinking much about health care -- despite disavowing it is about civil disobedience, many examples they've given revolve around people resisting what they think are improper government actions -- but they should be.

If there's a field where lots of stupid, or even bad, things happen to people , through design, indifference, or inaction, health care has to be it.

Every day, in every type of health care setting, things happen that aren't in the best interests of the people getting care.  People realize that they are happening, and, in many cases, they're happening because the rules say that is what is supposed to happen.

The list of disobedient acts in health care that would serve society is longer than my imagination can produce, but here are some examples:

• The nurse who says, no, I'm not going to wake up our patients in the middle of the night for readings no one is going to look at (or blood samples that can wait until morning).
• The doctor (or nurse) who knows a doctor that they believe is incompetent and decides, I'm going to speak up about it.  I'll make sure patients know.
• The billing expert who decides, no, I'm not going to keep up the charge master, with this set of charges that aren't based on actual costs and which almost never actually get used (except by those unfortunate people without insurance).  Instead, we'll have a set of real prices, and, if we give anyone any discounts, they will be based on ability to pay, not on type of insurance.
• The EHR developer who realizes that, it's silly that this institution's EHR can't communicate with that institution's EHR, even though they use the same platform and/or use the same data fields.  Data should go with the patient.
• The insurance executive who vows, I'm tired of selling products that are full of jargon, loopholes, and legalese, so that no one understands them or knows what is or isn't covered.  We're going to sell a product that can be clearly described on one page using simple language.
• The practice administrator who understands that patients' time is valuable too, and orders that the practice will limit overbooking and will not charge patients if they have to wait longer than 15 minutes. 
• The medical specialty that commits to being for patients, not its physician members, by developing measures, specific to patient outcomes, in order to validate ongoing competence.   The results of measures would be made public, reported to licensing boards for action, and used to de-certify their specialty designation for physicians not meeting required performance.

Going back to the award's principles of non-violence, creativity, courage, and taking responsibility for one's actions -- well, the above would all seem to fit.  They're all achievable.  It only takes someone to stand up and decide to do them.

I just wouldn't hold my breath waiting to see any of them happen.

Break the rules.  Do the right thing.  Change the world, even if it is "just" the health care world.

And, who knows, maybe even win $250,000 for doing so.

On the Road to Ubiquity

Are you reading this on your PC?  How very 1980's of you.  Or are you looking at it on your tablet or smartphone?  Better, but still so ten years ago.  Are you an early adopter, viewing it in virtual reality (VR), perhaps set on your favorite beach as the text scrolls through the sky like the opening expository of Star Wars?  Now we're getting somewhere, but, even so, you still probably have to wear a clunky headset that's attached to a computer.

If you're aware of your device, that's the past.  Welcome to ubiquitous computing.

You may know it as "pervasive" computing, "invisible" technology, or as represented by the wearables craze -- not crude wearables like fitness trackers or Google Glass, but the ones that are already on the horizon that allow computing anywhere and everywhere.  Tech guru Walt Mossberg describes the goal as "information appliances" -- "dead-simple to use, without training or the need for a manual."  Or a even anything that resembles a device.

Some examples:

• DuoSkin, developed by the MIT Media Lab, uses gold metal leaf devices that attach directly to the skin.  It can sense touch input, display output, and support wireless communication.

• SkinMarks, developed by Saarland University (Germany), are "electronic tattoos" that are as flexible as skin.  They allow for touch input and display.

• Smart clothing, such as the smart jacket developed by Levi and Google as part of Project Jacquard.  The jacket -- which will go on sale this fall (for $350) -- allows users to control selected features on their smartphone with gestures done at the jacket's cuff.  

• Smart jewelry, such as the LEDA gemstone gems developed by MetaGem.  It can display various colors based on the kind of notification received, and MetaGem claims it can also do fitness tracking, SOS mode, remote selfie control, even be used for gesture-controlled games.

IDC estimates that the "wearables and hearables" market will grow from 2016's $102 million market to $237 million by 2021, with smart clothing accounting for almost 10% of that market (smart watches/bands still dominate in their estimates).  IDC warns that: "Tech companies will be forced to step up their game and offer a wider selection of sizes, materials, and designs in order to appeal to a broader audience."

Similarly, Tractica estimates that smart clothing shipments will grow from 140,000 in 2013 to 10.2 million in 2020, and Gartner projects that smart garments could reach 26 million by 2020. 

There's more.  With all these embedded devices, you'll still want something you can easily look at, and you probably won't want to be carrying around something with a screen.  No problem.  Sony, for example, has been working on projected screens that still have touchscreen capabilities, sensing hand motions well enough to, say, type or play the piano.  It can even morph into augmented reality.

You probably don't want to be lugging around a projector any more than you do a PC.  Sony's projectors are fairly small, and Serafim's iKeyBo has a keyboard projector that can "fit in your pocket."  It's only a matter of time before projectors get small enough to also become embedded into everyday items, like your new smart clothing.

Of course, input is only part of what we want screens to do; we also want them to display.  The future may be in holograms, which, as SingularityHub recently proclaimed, "aren't the stuff of science fiction anymore."  Various firms, such as Transparency Market Research and IndustryARC,  expect huge increases in the holographic display market, with the former company specifically citing demand for medical imaging as a major driver of that growth.  

  

Why would you want a print-out or a screen if you could look at a hologram, especially when it comes to the workings of our bodies?

This is the world we'll soon be in. Anything can be the input device, anything can do the processing and communication, and anything can be the display.  Devices become "invisible."  As tech columnist Greg Gascon describes, 

When using a piece of technology that has become invisible, the user thinks of using it in terms of end goals, rather than getting bogged down in the technology itself. The user doesn’t have to worry how it is going to work, they just make it happen.

Our current devices will look as old-fashioned and clunky as rotary dial landlines look to today's teenagers (that is, if they know what the latter are).

Especially in health care.  

Go to the doctor's office and they're listening to your chest with stethoscopes, taking your blood pressure with a cuff, measuring your temperature with a thermometer.  Sure, some of those may be digital now, but they're still all based on technology that is decades or even centuries old.  Go to the hospital and it's even worse: all the wires make it hard to move and the beeping of all the associated monitors make it hard to sleep.   

It doesn't have to be this way.  

Instead of all those monitors with all those wires, slap an e-tattoo on.  It could act as the sensor and the display, while updating your records wirelessly.  Instead of the intermittent, crisis-driven contact we now have with our physicians, our invisible monitors could keep track of us 24/7.  They'll alert us and our providers when something is off.

Instead of splitting attention between you and an EHR screen, you and the physician could view a holographic image of you that serves as your electronic record.  It can be updated with hand gestures and voice, help both you and your physician understand the issue(s) and your history, and help you understand what is happening with your health.

Of course, there will also be the nanobots working inside us.  Talk about ubiquitous, talk about invisible!

We're going to have to get past our fascination with the latest and greatest devices -- a new iPhone! a 4D television! -- and let their technology fade into the background.  As it should.

It's going to be very different, very exciting -- and sooner than many of us will be ready for. 

Health Care in a Post-Privacy World

Someone knows you are reading this.

They know what device you are using.  They know if you make it all the way to the end (which I hope you do!).  They may be watching you read it, and listening to you.  They know exactly where you are right now, and where you've been.

As FBI Director James Comey recently proclaimed, "there is no thing as absolute privacy in America."

Director Comey was speaking about legal snooping, authorized by the courts and carried out by law enforcement agencies, but, in many ways, that may be the least of our privacy concerns.

Your phone knows where you are, all the time.  Go outside and chances are you'll show up on surveillance cameras at some point.  Facial recognition software can now easily identify you (e.g., Facezam), as can supposedly de-identified data.

Think about what Google knows about you.  Think about what Facebook knows about you.  Think about what Amazon knows about you, including anything you may have told Alexa.  Think about what your mobile phone carrier or your cable/internet providers know about you.

It's pretty staggering.

We all know, in theory, that all these organizations are collecting information on us, and even that they're using it, ostensibly to "help" serve us better.  Again, in theory, we've given permission for them to collect and use our information -- in some cases, to even sell or share it with other organizations, with whom we may have no other relationship.

And these are all from the "good guys" -- law enforcement agencies or well known, usually publicly traded companies we're electing to get services from.   There's a whole world of hackers and cybercriminals who are after our data, for fun or for-profit, and they're pretty damn good at getting it.

I'd be remiss if I didn't note the recent WikiLeaks disclosure about how pervasive the CIA's surveillance capabilities are.  Whether they only use them per their mission, whether they can actually absorb and analyze all the information they collect, whether this is the whole iceberg or just the tip -- I don't know, but I'm pretty sure the C.I.A. is not the only one with these kinds of capabilities.

And if we think things are bad now, wait until the vaunted Internet of Things (IoT) really takes hold, when virtually everything may be subject to attack.

The Pew Research Center has been following the digital privacy issue for several years, and concludes that:

• 91% think they've lost control over their personal information;
• Few have confidence that any organization will protect their personal information;
• At most only about half think they understand what happens with their information;
• Most claim to have taken actions to protect their personal information, but most also admit they'd like to do more.
• Perhaps most telling, our attitude about privacy is "it depends" -- e.g., it is OK to use their information if used to combat terrorism (or perhaps to make shopping easier).

Interestingly, younger respondents paid more attention to digital privacy -- but also were more likely to have shared personal information online.

What does all this have to do with health care?  After all, we have HIPAA to protect our data, right?  

Not so much, as it turns out.  Health care data breaches were up some 40% since 2015.  Accenture says 26% of Americans have had their health data breached -- and half of those were victims of medical identify theft, costing them, on average,  some $2,500 in out-of-pocket costs.  

Despite that, Accenture found that consumers still trusted health care providers and payors with that data much more than they did health technology companies or the government.  That confidence may be badly misplaced, according to IBM's Paul Roemer, who asserts that the average hospital has 100,000 unsecured (data) entry points, and large hospital systems 1,000,000.  

Indeed, Avi Rubin, the head of Johns Hopkins University Health and Medical Security Lab, told NPR that the health care sector was the "absolute worst" in its cybersecurity problems, because: "Their data security practices were so far below every other industry."

When all of our records were on paper, when none of medical devices and equipment were connected, security was not very good either, but at least the exposure risk was limited by proximity.  In an almost fully digital, connected world, though, we should all feel very exposed.

Yes, certainly people -- the biggest weakness for data breaches -- could be more vigilant.  Yes, certainly, all organizations should to beef up their privacy policies and their efforts to protect our data.  Perhaps blockchain or other alternative approaches to security can mitigate the risks of our data being exposed.  

But the genie is not going to go back in the bottle.

We leave digital footprints.  Lots of them. We've implicitly or explicitly decided that the advantages of being digital outweigh the disadvantages.  It may be time to revisit our attitudes and approaches to privacy, in health care and elsewhere.

It is supposed to be "our" health data, but if, as they say, possession is nine-tenths of the law, you'd have to say that the institutions that house it own it.  They are the ones who are failing to protect it, who are already sharing it -- for research and for commercial purposes -- without us even knowing it (or profiting from it), and they are the ones who sometimes charge us to get copies of it (usually delivered in paper form!).  And yet they seem to have a hard time sharing it when we show up in an ER or at a new doctor. 

The new era of Big Data won't happen without all our little data, yet we haven't figure our how our "little" should relate to the "Big."

 

HIPAA was literally passed in the previous century, when the Internet was still feeling its way and few of us relied on it.  Now, though, as Evan Schumn writes in Computerworld, "true online privacy is not viable."  We urgently need to revisit ownership of our data, what sharing of it means, to whom, and what privacy is realistic to expect in the 21st century.  

Like it or not, there is no absolute privacy, not even for our health information.  

Your Smartphone or Your Life

Rep. Chaffetz's recent remarks suggesting that some Americans should invest in their health instead of in a new iPhone reminded me of nothing so much of the old Jack Benny bit, where Benny is accosted by a robber who threatens "your money or your life."  When Benny doesn't immediately respond, the robber prompts him, and the supposedly miserly Benny snaps back, "I'm thinking it over."

I suspect that, like Mr. Benny, many of us would have a tough choice between our smartphones (and our other devices) and our health.  It may be not so that we're miserly as it is that we're addicted.

To be fair, Rep. Chaffetz subsequently walked back -- to some degree -- his comments, after taking merciless criticism on social media.  However, his point is not entirely wrong: we do have to make choices, and make our spending and lifestyle choices carefully.  Based on our health habits, most of us are not making choices that optimize our health.  And you can blame our various devices at least in part for that.

We watch a billion hours of YouTube alone each day, every day.  We spent another billion hours a month playing mobile games alone, and that was for 2015.  In the U.S., we spend some 5 hours per day on our mobile devices, eclipsing time spent watching TV.

Lest you protest that this is all just harmless entertainment at worst and important connectivity at best, keep in mind that the CDC reports that (in 2013!) 1 person dies and another 1,161 are injured every day due to "distracted driving," which is most commonly attributed to use of mobile devices.

Social psychologist Adam Alder, in a new book Irresistible: The Rise of Addictive Technology and the Business of Keeping Us Hooked, asserts that our love of our devices is not just passion but addiction -- literally.  It's a behavioral addiction, but one with a biological basis in many cases, such as when the brain's reward mechanisms that are triggered by, say, online games or online shopping.

As Dr. Alder told The New York Times: "The people who create video games wouldn’t say they are looking to create addicts. They just want you to spend as much time as possible with their products."  The same applies to Facebook or Snapchat or Amazon; they want your eyeballs and they want to hold them for as long as possible, as many times a day as possible.

Indeed, Wall Street likes to measure them by how many users they have, how often those users engage, and for how long they stay engaged.  The tech companies tweak their offerings in the way that a candy bar maker might adjust the sugar content -- or a cigarette maker might change the nicotine levels.

Dr. Alder notes that our increasing use is not a matter of lack of will power, quoting Tristan Harris, "there are a thousand people on the other side of the screen whose job it is to break down the self-regulation you have."

This is an issue that Mr. Harris has been outspoken about for sometime.  He spent several years as a "design ethicist" at Google, and bills himself as a design thinker, philosopher, and entrepreneur.  He wrote a long, thoughtful post on Medium last year, detailing how technology "hijacks" our minds.

Mr. Harris compares what technology does to what magicians do: "They give people the illusion of free choice while architecting the menu so that they win, no matter what you choose."  They do this in part, by controlling the menu, so that we rarely think about the choices we're not being offered.

He also compares our reliance on our devices to the allure of slot machines: every time we check it, there is a chance for us to "win," whether that is a new email, Facebook post, or other notification.  Our brains light up and crave another try.  For some of us, that is checking our email, for others, updating our Facebook status, and still others posting on Instagram or tweeting.  

All in all, Mr. Harris details 10 "hijacks" that technology companies use to exploit our psychological vulnerabilities.  As he says, "Once you know how to push people’s buttons, you can play them like a piano."

And all this is before augmented reality (AR) and virtual reality (VR) have become widespread.  Imagine how they will enhance our addiction.

Some are fighting back.  The Wall Street Journal's Joanna Sterns detailed efforts to "lock up your smartphones, such as at concerts, dinner parties, or schools.  Yondr, for example, makes pouches for smartphones to create phone-free spaces; their slogan is "Be Here Now."

Wired, of all publications, just published an interview with author Florence Williams, author of The Nature Fix, the thrust of which was that we only spend 5% of our time outdoors, and that's not nearly enough.  And, no, being outdoors in VR or simply being on your smartphone while outdoors don't count.

We've been talking a lot about the opioid epidemic in the U.S., which is, indeed, a very real, very serious health care crisis.  But people like Dr. Alder and Mr. Harris would assert that our addiction to technology may impact even more of us and pose an equally grave threat to our long-term health.

Mr. Harris has founded Time Well Spent, "a movement to align technology with our humanity."  We're not going to get rid of our smartphones or other technology that we've come to depend upon, but we can do better about making it serve our purposes, not vice versa.

And one of those purpose should be our health.

It's not that smartphones are a "luxury item" that should be forgone to make better health choices, as Rep. Chaffetz was trying to assert, as it is that we're not using our technology very effectively to improve our health.  Exercise more, eat better, pay more attention to our health, especially any existing conditions.  Those are the kinds of things we should all be doing -- and that technology can help us with.

Or we can let them dictate our behavior, going for more time, more clicks, more immersion.

What we end up actually doing will determine if we're using technology, or are simply addicted to it.